Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Symptoms/ Diagnosis


kalexat

Recommended Posts

kalexat Newbie

Hello, I'm new here and I just have a few questions.

So a little background info...

My grandmother is celiac, and was diagnosed by a biopsy with a negative blood test. My aunt and cousin are both waiting to see a gastroenterologist as their GPs suspect they are celiac. My grandfather died of colon cancer, which I know could have been because of undiagnosed celiac.

I am 17, and have had stomach troubles as long as I can remember. My gas interferes with my ability to socialize, as attempting to hold it in causes me to get cramps and become nauseous. It is extremely frequent, often with days where I will need to pass gas every 10 minutes, and have to keep making excuses to get away so I don't gross people out.

Every couple years I will become violently ill with diarrhea and vomiting for about 24 hours, and then immediately feel better. I know that food contamination can come from any source, but the days when it has happened have not been preceeded by and change in diet ( no raw cookie dough or undercooked meat etc) I have always naturally avoided foods high in fat, white bread and sugar, and caffeine, as these all seem to make my symptoms much worse

I struggle with disordered eating, but when I am eating a healthy amount and am at a good weight (5'5, 125 pounds, athletic) I typically eat between 3000-3500 calories a day. It is very easy for me to lose weight, and although I am fairly active I feel that this many calories is way above what any of my friends who are the same size as me eat.

I am seeing a gastroenterologist right now, and have been scheduled for a biopsy and colonscopy. She suspects that it is celiac. I have had 3 negative blood tests though. Is there anything else my symptoms sound like? Also, I have to do a 24 hour fecal fat test(gross!), and does anyone with diarrhea have any tips for doing this? Is the biopsy scary, and how soon will I feel normal after the anasthaetic?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

Many of us have negative blood tests but have Celiac. Eat gluten until you get your endoscope so your test will be more accurate.

The endoscope isn't bad at all. I'm scheduled to have one next week and I'm not nervous at all. You may feel a bit groggy afterwards and not remember everything that happened. You should have someone with you to drive you home. Everyone reacts to meds differently. In general it's advised that you plan to spend the rest of the day relaxing..and don't make any life altering decisions. ;)

We stopped at the grocery store on the way home from my last scope. I wasn't good at handling money. LOL The effects wore off by the time I got home.(at least I think they did) :D

Good luck to you. I hope you get some answers.

BellaBella Rookie

Hi kalexat.

The endoscopy should be a piece of cake. I had one last week as well as a colonoscopy. The prep for the colonoscopy is what sucked but the actual procedure really was simple, fast and "easy." No pain at all afterward.

I went in, got in the gown, got the IV and was wheeled into the procedure room. The nurse said "nighty-night" and the next thing I knew I was in the recovery room with my husband. It was almost surreal how fast it all seemed. I felt pretty good when I left the office, my husband and I went for breakfast. But then I went home and slept the rest of the day, for like 5 or 6 hours. Again, no pain, no discomfort, nothing.

So, don't plan anything for the rest of the day just in case, but know that the actual procedure itself should be a piece of cake. That's the only way I can describe it.

Good luck!

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,085
    • Most Online (within 30 mins)
      10,442

    ThomasA55
    Newest Member
    ThomasA55
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...